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Scheduled RAI for next Weds., March 10th...please help

My oncologist at my local hospital told me I was in the gray area for RAI since my papillary carcinoma tumor was 1.2 cm. It was found in my total thyroidectomy on Feb. 3rd. I've been off my levothyroxine since Feb. 2nd. I had my thyroglobulin checked on Feb. 26th and it was .1 and my TSH was 15 at that point. He told me my TSH should be between 80-100 if/when I do the RAI. I was leaning toward having RAI and he suggested that I talk to a radiation oncologist at another facility since he would be the one to administer the RAI.

I had that 2nd opinion appt. on March 4th with the radiation oncologist. He also said I was in the gray area for receiving RAI and he could understand my decision either way. He couldn't tell me it will reduce the chance of a recurrance but it will make tracking thyroglobulin much easier in the future. He told me he could do the treatment as soon as next Weds. the 10th, which surprised me. He did not sound concerned that I hadn't been on the LID and that I wouldn't be on it for even one entire week if we go forward with next Weds. He gave me the info during my appt. and told me to try to start following it starting then (on the 4th). I'm supposed to go get my TSH and thyroglobulin checked again on Monday the 8th but he felt my TSH should be high enough. He said it needed to be 25-50, which is much lower than I had been previously told.

My question is, does this sound right about the LID and TSH? What has everyone else's experience been?
Even thought the RAI is scheduled and I'm about 75% comfortable that it's what I want to do, I still have some uncertainty.  I know there's no going back once it's done so any advice is appreciated.
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1218579 tn?1267638816
I had a partial on 1/26  and remaninder 0n 2/5 resulting in total Thyroidectomy for Papillary Ca 1 cm.  I too was told I fell into the criteria for questionable RAI.  I met with the Nuclear Med. Doctor the one who would be administering it and went over all pros and cons.  I decided to do it because it seemend like if I didnt then I was leaving some thyroid tissue behind and leaving myself open to regrowth or reoccurance.  As far as raising your TSH using the LID in the time frame sounds possible.  I was told and have read your tsh only has to be over 35.  I went from 33 - 63 in 7 days of LID.  I did RAI 100mci on 2/24.  Make sure you follow all the precautions if you have children or live with anyone.  I was isolated 3 days in my own bedroom, used palstic covering for almost everything and threw away my towels and clothing.  My husband came home after three days but my children did not come home for 7 (that was our choice) wanted to be extra safe.  Also be aware of becoming Hypo, this is normal and for me got worse after RAI.  RAI itself wasnt that bad little, nausea, bad heart burn and puffy sore face, neck.  All these are temporary.  I unfortunatly had an allergic reaction to the RAI, I guess there is sulpha in the capsule and Im allergic to that.  Although none of the doctors new this.  It has not been fun but I dont regret doing RAI, its very scary but to me it was worth it.  Keep looking up info theres lots on this site.  RAI seems to be very contraversial, I did alot of research on my own, contacted the government regulatory for the RAI itself to get as much info as I could.  Ultimatly you need to do what you feel is best for your health.  I was not comfortable with it but felt it was best for my health.  Feel free to write back if you have more questions.
  
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Avatar universal
Thanks kspitzke for your response.  It sounds like we have a lot in common.  Sorry to hear about the allergic reaction and I hope you're feeling better.  

When did your symptoms start after RAI (nausea, bad heart burn and puffy sore face, neck, etc.)?

My plan is to stay with my parents for 7 days.  They have a bedroom and bathroom they don't use except for guests.  That way my son and husband won't be exposed.  It's going to be hard but hopefully for the best in the long run.

Were you on the LID for 7 days?  Did you feel comfortable that this was long enough before RAI?

There is a lot of contradictory info out there so any other advice you may have would be greatly appreciated.
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1218579 tn?1267638816
I was on LID for about 10 days but that was only becasue fo schedualing the RAI.  After TT on 2/5 my TSH was at 5 I did not do any diet or thyroid meds until 2/15 I had blood drawn that day but didnt find out till 5 days later that my TSH was at 33.  I got to 33 with no LID I wasnt even trying.  I started LID at 33 not knowing I was that high and 7 days later I was at 63.  As long as your not taking any thyroid pills and have had a TT your TSH should be rising on its own.  Do follow the LID because the less iodine in your body before the test the more absorption you will have from the test.  I was told I only had to be above 35 to do the test.  Keep in mind normal TSH is around 2-4 so 35 especially 63 is high.  I did not get real hypo more hyper (unusual) I heard people said they started felling hypo bad at about 70.  I dont see a need to go that high if you dont have to.  
Im glad your staying away from your children.  I covered everything in plastic.  Remotes in zip lock baggies, even cell phone worked through baggy.  I threw away all clothing, sheets, towels I used in the first 4 days.  I did not leave my room for 3 full days and did not let my kids coome home for 7 dyas.
If you go to Thyca.org website there is info on preparing for the test and a LID cookbook and list of what you can and cant have.  Very helpfull.  
I became nausea's the first night, I took the anti nausea meds they gave me (make sure you get some)  Puffiness of the face and neck, jaw the whole area about 24hrs after.  Heart burn still bothersome but extreme in the first couple days.  I didnt like the sour candy I think it made me feel sicker, but it is important to get salivary glands producing.  I found that Trident gum the fruit flavors, orange or strawberry worked really good for me i spit into a cup every couple of minutes.  Not fun but had heard that you should spit allthough some say you dont need to,  I figured why have extra iodine go through my stomach and liver If I didnt have to.  Water, water and lots of water flush your system out.  
I dont sleep well and having high TSH levels I became very emotional, but I also hear this is very common just be prepared. Im not usually emotional so this was new for me.  
Now im about a week and a half post RAI, I dont know if its the meds for the thyroid, the rash or just normal but I feel the worse I have through this whole thing.  My Heart rate has been elevated, tremors, cold, sweets, and emotional highs and lows.  DOnt want to scare you just want to be honest.  Couple weeks ago I was doing what you are, trying to get honest information.  Hope it helps.  I know they say this is the best cancer to have but I think "all cancer *****"!  Jsut know that God has a plan for all of us.  WE might not understand but we accept.  Just take it one day at a time.  
P.S.
it helped me to have someone make and have food ready while on LID.  I spent hours reading labels it takes time and is a little more expensive.  Here are some foods I found it might save you some time from reading every label.
I did all organic fruits or veggies that were on the list.  No fresh pineapple but canned ok as long as no added salt.
Kosher salt as long as it says iodine free
Ezekile 4:9 low sodium bread they have one with no dough conditioners,salt P.S. tastes better toasted.
post shredded wheat you cant have milk but this was good with sugar and pineapple
marshmellows and I found organic no wheat, salt rice puff cereal to make rice crispy treats and used no salt no dairy butter organic and yucky but it worked.
If you live by Whole foods the have a gellatin dessert in a box thats good
Just look at all the labels carefully it might say sodium free but still have salt.  
I used organic strawberry jelly and found a peanut butter with no salt, soy or dairy.
Use herbs while cooking to add flavor or it can be very bland.
Hope I didnt put you on overload.  Hope something here helps:)
Helpful - 0
1218579 tn?1267638816
One last thing the first doctor who said 80-100 maybe was talking about the RAI131 dose, that is usually around 100 for Pap. Ca patients.  The doctor who said 25-50 sounds like he was talking about TSH levels.  That would explain his not bieng concerned about bieng on diet for very lonf if you were already at 15 it doesnt take long to raise if your not on anything.
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